Ruxolitinib Relief Trial .

[maestromaverick]

Hi all , just to let you know I started on the trial last Thursday ( 8-8-13 ) and so far have felt no better . But its early days and won't know for sixteen weeks what I'm taking . The trial is at Pilgrim hospital Boston under the supervision of Dr Final I . Will try to give updates of progress .

[maestromaverick]

That should read Dr Final I . Sorry.

[Mazcd Partner MPNVoice in reply to maestromaverick]

Hi Maestromaverick, hope it all goes well for you. Maz

[maestromaverick in reply to Mazcd]

Thanks Max . That should have read Dr Rinaldi at Boston Pilgrim Hospital .

[geordie]

Hi

Just to update I am also taking part in the Relief trial I am now in my 13th week. I am at the Nottingham City Hospital and my patient number is ooo1 so I think i was the first to be recruited! My consultant said that It will take a couple of weeks after the designated 16 weeks to find out if I am on Ruxolitnib. I am unsure if there has been much change but hot sweats have reduced but not gone. I would say I feel marginally better but. Will keep you updated on progress.

[maestromaverick]

Hi Geordie , glad to hear all goes reasonably well for you. I used to work at Nottingham City Hospital as a staff nurse as I'm originally from Nottingham . Like you I've felt very little change in my symptoms but live in hope . Stay well and good luck .

[malachy]

I hope the trial goes well for you both!

Best wishes

Diana

[linds]

Hello all of you pioneers - how are things progressing? I do hope that everyone notices some improvements would be really interested to know how you all are.

Best wishes

[maestromaverick in reply to linds]

Hi Linda . I'm in week 8 of the trial . To be honest I don't feel any better and my white count has more than halved in the last four months . This is causing a bit of concern but I'm back at the Pilgrim hospital next Thursday . Such is the nature of a double blind trial I won't find out what I'm taking for at least another eight weeks so I could still be taking the hydroxy which doesn't like me and I don't like it but don't much fancy the terminal alternative either . Thank you for caring and I hope your as well as possible .

[linds]

So glad you saw my note. It's a shame you are not feeling better to say the least, these trials are so drawn out when what we want is an instant answer - impossible I know. I will continue to send positive thoughts through the ether to you and all the others. Thank you, I am not bad at all taking everything into account. It just takes a lot of understanding doesn't it having something so obscure. Keep as positive as you can Maestomaverick, thinking of you.